I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

Use the search bar above to search episodes by topic. Search "phawareMD" to discover podcasts with medical professionals.

Get our custom smartphone app (for iPhone™, Android™, and Amazon™ devices). It's the most convenient way to access the phaware™ podcast.

The views and opinions expressed in the phaware® podcast do not necessarily reflect the official policy or position of phaware global association. Information on phaware.global and phaware social media sites is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

We knew nothing was wrong with Haylee until age three. At her
three year old checkup her doctor heard a heart murmur for the
first time. He was going to wait a month and then see if he heard
it again, and then schedule an echo. In the meantime, her
grandfather had been paralyzed and she'd been going to weekly
appointments with him. They noticed her blue lips and her blue
fingernails, so they urged us to call our pediatrician, which we
did.

She had an echo that same week and we found out she has a
complete arterial ventricle heart defect as well as pulmonary
hypertension. So that very same week, that Friday, she was admitted
into St. Children's Hospital and she had a heart catheterization
where we learned that she had severe pulmonary hypertension.

We were devastated, angry, like “What is this doctor telling us,
that our child's dying? She was just fine a day ago.” So it took a
lot of time to sink in, a lot of educating ourselves, reaching out
to the PH community before we banded together and said we're going
to fight this and do what we can to help save Haylee and everyone
else with this.

We started an annual walk that we just had our first walk this
year called PH
PHun Walk4Hay, which 100% of the proceeds are going to the
Robyn Barst Foundation for research for pediatric PH patients. So
we just spent a lot of time doing that, getting that whole walk
together. And it was actually a very big success this year. We met
our goal of 10K and still going. In ends in September.

Research
is important for pediatric pulmonary hypertension because there's
only one approved treatment for children. Haylee's on that but
she's also on two medications that aren't even approved for
children, but that's her doctor's only choice to treat her. So we
just need more research to find out better ways to treat this and
ultimately, of course, a cure.

PH changes everything you ever know. Just know it's definitely
going to change everything about your life. You just have to
educate yourself, connect with other people, find people that are
going to be supportive for you, and then advocate which way is best
for you.

I would say her doctor was pretty up front with her about what
was going to happen and how serious the disease was. It took a lot
of time for us ourselves to let that sink in, but I think he did a
good job of letting us know that this is very serious and this is
going to change your life and it's going to be complicated.

You just have to take it day by day and then learn it and it
will become basically your new way of life, which it has. And
Haylee has been our inspiration. So Haylee's the one that keeps us
laughing. None of it bothers her and she finds a way to enjoy life
no matter what.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global